Hello everyone,
Hope you are all keeping ok.
I was diagnosed with CML in January 2022. Been on a bit of a roller coaster ride since then. In February 2023 I had a blast crisis. And doctors said I now had ALL. That has since been changed to CML with a blast crisis.
In October 2023 they found I had leukemic cells in my spinal fluid. That was cleared after a series of Intrathecal chemo injections. I am still having ITs now, currently once every 6 weeks.
I have been on three different TKI’s since I started early 2022. They didn’t all fail but sent my blood levels down to levels where the doctors weren’t happy.
In April this year I started taking Asciminib. It has been doing its job nicely and my BCR-ABL came down to 0.158. Yay I thought, I am getting there. After a recent test though they said my BCR-ABL had gone up to 5.047, which I find concerning. I am having another test for BCR-ABL on Tuesday the 26th November. I have changed the time I am taking the pills now as I know that I am not to eat within two hours after taking the pills. Not that I thought I was anyway. Maybe the BCR-ABL result was wrong. Or is there something more sinister going on? To note I have the ASXL1 mutation. Has anyone else had such a change in results like that?
Anyway thanks for reading this. Hope you all have a good day.
Paul